I have Interstitial Lung Disease, with Pulmonary Fibrosis. It is a terminal illness, with no current treatment that improves or arrest the disease, and therefore no cure.
The only chance is a heart and lung transplant, that I am not eligible to receive. I cannot seem to lose the 100 lbs I have put on while taking the Prednisone steroids.
But this is not just about me, this is about dying in one of the richest countries in the world.
My prognosis has been the same all along, this disease will kill me. I have managed for over 6 years now. Trying to maintain a regular life, trying to continue to work, Experimenting with everything no matter how strange, to arrest this disease. Alternative medicines, lifestyles, if someone somewhere suggested a way to arrest the ILD, I tried it.
I have not sat around mulling over on my demise, sitting around feeling sorry for myself, wallowing in self pity. But I have been angry, down right spitting mad as a matter of fact.
HOW DARE YOU, take my life. HOW DARE YOU.
And on the way to my death, could there be a little dignity, oh hell no. this is the U S of Fucking A, we kick our sick to the curb. The medical community tries to guilt them into acting as if they were not at all sick, cheat them out of any quality time they could have had with family and friends, before the final days that is, in a hospice room. Under serve them in the medical field, under medicate their pain, in case they become addicted, and of course because they are under or uninsured, we get shuffled through over burdened emergency rooms, receiving the same tests over and over, and little or no care.
First thing to go, the job. NO room at the inn for you anymore, you need accommodations. I don't mean bathrooms or wider aisles, that they would gladly do, mostly, but the time off to see Doctors, see specialists, time off for side effect from therapeutic drug treatments. Time off to seek help with the ensuing depression and anger and grief. The all run out of sick leave and vacation fast.
Second, Home, We made America so that it takes 2 incomes to keep the home. Lose one, lose it all. So the home falls behind quickly and foreclosure becomes immanent. More time off here by the way, credit counseling where some 23 rd old fresh outta college tells me everything I did wrong in the last 20 years with my money. Over looks the massive savings that I spent trying to keep my house, run a business, feed my family. OPPS I MUST be a bad person for signing that ARM loan. What my income went from 125 Yr to Nothing for 2 years then 19,000 on SSDI. I MUST have fucked up somewhere, so the kid tells me. I GOT SICK NOT STUPID.
Lost your job, lost your house, now what? Too sick to work, must be lazy then right? Off to Vocational counseling, must do under SSDI regs. Again a 25 yr Old, "counselor" WITH a double masters, tells me how I went about my career wrong, because i DID NOT GET TO FINISH COLLEGE. IT WAS THE 70'S, Most women did not even go to college. And now to correct my career path, I need to go back to college? I SWEAR TO GOD! I was a director in a fortune 200 Company, I managed a division of procurement. Prior to that I did mega billion dollar contracts. ARE you Serious? I had a great career, UNTIL I GOT SICK.
So I quietly explained to him that the reason I wear oxygen 24 / 7 is that I am dying, not a temporary illness. After a few "no ways", and "uh uhh's", He listens for a minute then begins to Look frantic, I will be a failed mark on HIS performance review, so he has to get a supervisor, and figure out how to get me out of the system, or take away my SSDI for noncompliance, making it my fault. Don't I WANT to go back to school? DUDE dying, not a cold, not the flu, not a bad back, dying.
So here I am sitting in my foreclosed on home, under medicated for the pain, unemployed, on SSDI. My family has suffered immensely.
I am a useless burden to society, my family, my old employer. Why do I think that? It is the sole and only message that has come through loud and clear. NO Work, no dignity, no home, no insurance.
Do any of you really wonder why suicide comes up?
I will only get sicker, more of a burden. Caring for me, dressing me, getting me food. Yeah that is the life I wanted at 54.
Why should I stay?